Month: June 2016

R. Leigh Hennig, Editor, is a writer, editor, and science fiction nerd living with his beautiful wife and three children in Seattle, Washington where he works as a network engineer. He is the publisher and editor-in-chief of Bastion Science Fiction Magazine(unfortunately on extended hiatus) and has written numerous essays on disability in speculative fiction, along with the usual slew of science fiction and fantasy short stories. He is currently pursuing his MFA in Creative Writing & Poetics from the University of Washington Bothell. You can find more of his current work on The Semiotic Standard.

It’s a cool, sunny fall afternoon in Seattle. I’m in my backyard enjoying a Founder’s Breakfast Stout, grilling burgers, while my children—five, six, and eight (the youngest is a girl)—run about and play. The youngest two are chasing each other through the grass blindly, their shirts pulled over their faces. They laugh and squeal and carry on like the wonderful lunatics that all five and six-year-old children are. I smile. Behind them labors my eight-year-old, trying to keep up. He wobbles awkwardly as he swings his arms far out to his sides, attempting to maintain his balance. His left foot turns in sharply while the other struggles to compensate, despite the corrective action of braces and seven surgeries. More are planned. I still smile, but it’s a burdened smile.I am able-bodied, as are my wife and youngest two children. My oldest son has spina bifida. Despite our health, my wife and I still feel the shackles of disability. We don’t face the outward struggles that my son and other disabled people endure. Our burden is an internal one, unspoken to others. Even from those within the disabled community, there are some that will take offense to my description of disability as “shackling,” and chastise me for it. How dare I suggest that my son needs to be “fixed”? According to some within the disabled community, he’s not. He’s able-bodied. After all, what do we know about being disabled? We’re told that we should shut up, and be thankful that it’s not us, and that our feelings have no place out in the open. It’s taken me a long time to disagree.

There’s been a number of works, both fiction and non, that have taken a realistic look at what it’s like to be disabled. It’s a little trickier to find something in the speculative fiction world that exposes the kinds of things that the loved ones of disabled people go through, however. “The Promise of Space” by James Patrick Kelly (Clarkesworld, Issue 84, September 2013) speaks to this beautifully. The story is told exclusively through dialog between two people: Kirk “Andy” Anderson, and his wife, Zoe. Andy is an astronaut that becomes mentally disabled after excessive exposure to radiation during a mission, and although his mind is mostly destroyed (he is aided by a kind of “augmentation” which processes memories and assists him in understanding and communicating), there’s still something left of him to interact with Zoe. The story takes a look at how Zoe reminds him of their history together, and touches upon her struggles in dealing with what’s left of Andy. This story isn’t so much about what it’s like for Andy to be disabled; it’s about what Zoe has to go through as the able-bodied loved one. Speaking to Andy during a visit, she says the following:

“I’m sorry for the way I spoke to you last time. That’s why I missed the last few visits. I don’t trust myself to say the right thing anymore. I can’t filter out my feelings when I see you like this.”

These few lines only begin to convey the depth of Zoe’s emotional struggles. Zoe is madly in love with her husband, but she struggles in dealing with his current state. On one hand, she wants to be with Andy. On the other, her despair at his state is too great to manage. She grieves when she’s with him, but needs time away. There’s a tremendous amount of guilt that’s there as well, which she clearly expresses through her apology and her return visit. Seeing him again is a painful decision.

When I think about the struggles that my son faces today, and what I know he will face in the future, my heart aches. Still, I’ve been told that he’s fine just the way he is. But that’s not true. His body is broken, and I would give anything if I could take his disability away. While he’s expressed those exact same sentiments to my wife and I on numerous occasions, of course we encourage him and do what we can to make him feel confident, normal, and comfortable in his body. But we’re not bad people because we wish we could cure him, and the loved ones of other disabled people need to know the same thing. We love our son, but we hate his spina bifida, and it’s okay to make the distinction. There are tremendous feelings of multifaceted guilt that we struggle with, and that needs to be addressed.

A couple of months ago, our son went to a summer camp for a week. The camp was funded by charity work and run by volunteers and was exclusively for people who had a disability. There were over 100 kids present, ranging in age from seven to eighteen years old. All kinds of disabilities were represented, and they were well taken care of. Their medical needs were met by the wonderful staff on hand, and the camp did a fantastic job of helping to foster a sense of community and belonging. He made friends, sang songs, built campfires, and did just about all of the kinds of things that kids do when going to a summer camp. For one week, my wife and I just had our younger two children. We didn’t have to take care of his special needs. We didn’t have to struggle with wheelchairs or restroom considerations. There were no medications to manage, and no restricted activities that we couldn’t do as a family.

For one week, life was so much easier. And the amount of guilt we had for feeling that way was, and still is, crushing.

When you’re the caregiver of someone who has special needs, depending on what those needs are, there’s a number of complications that are introduced to your day-to-day life. You do them and try to keep your chin up. You try not to let the constant doctor appointments, medications, therapies, and the other things you have to assist with get the best of you. For families in such circumstances, it’s just a part of adjusting to a new normal. Most of the time, we’re successful.

There are times though where you think about what it would be like if you didn’t have to do any of those extra things. It doesn’t usually hit you when you’re in the hospital yet again. It’s not when I’m pointing other nervous parents to where the vending machines are and which break room has the best coffee, and I realize that there’s a good chance I know my way around that hospital better than some of the staff. But there are times when you’re at home, or at the grocery story, or some other typical place, doing any number of normal day-to-day things when it hits you the hardest, in waves. I think about how much easier it would be if my son could be like everyone else, or what life would be like if we didn’t have to deal with these things. Then come the feelings of anger, followed by regret, most of which is internally directed. Guilt is not far behind, and you can’t help but feel like a terrible person because you long for what it must be like to have a normal life.

Zoe feels these things as well. She tells Andy that she won’t be coming to visit him when his body dies, when all that’s left is the augmentation. She grieves terribly for her husband. But there’s a part of her that must be relieved at not having to shoulder the burden of his disability, and the guilt that she has to cope with is surely staggering.

As the father to a disabled child, admitting to myself that I even have these feelings was a challenge. Admitting it publicly is even more difficult. Writing this has been one of the most challenging things I’ve done in a long time, but I know I am not alone. I know there are other parents, brothers, sisters, grandparents, aunts, uncles, friends, and all kinds of other people who suffer with the weight of having to care for someone with a disability. These feelings don’t consume me, I don’t regret my child, and I don’t let these darker emotions keep me down. I’m not bitter, and it doesn’t influence my interactions with my son, or lessen my love and admiration for him. But it’s important to know that it’s okay to wish for your loved one to be “fixed,” even if a lot of the members of the disabled community will reject that and tell you that you’re wrong. It’s okay to feel relief when we don’t have to cope with these burdens. As long as we manage those emotions in a positive way and maintain a healthy perspective, there’s no need to feel guilty, or to internalize all of that.

My son has spina bifida, and I’m not happy about it. My wife is not happy about it. But we’re not going to bottle that up, either. We’re not going to pretend like everything is okay, because it’s not. We’re not going to let our guilt consume us while others tell us that we’re wrong and we have no right to feel the way we do. We’re going to stay positive when we can though, and maintain a healthy outlook for ourselves, as well as our son. We are not horrible people for wishing that he did not have spina bifida, and for wanting to live normal lives. And that’s okay.

J.T. Evans writes fantasy novels. He also dabbles with science fiction and horror short stories. He is the president of Pikes Peak Writers. When not writing he flings code at the Day Job, homebrews great beers, spends time with his family, and plays way too many card/board/role-playing games. You can catch up with him on Facebook

There have been a great number of studies in the creative mind and how it relates to mood instability, erratic behavior, and general mental disorders. This is not such a study. Everything here is anecdotal from a personal standpoint, not scientific. Keep that in mind as you peruse my words. Also, nothing here is meant to be used as medical advice. It’s all about my personal journeys, how they relate to my writing, and how you can also be a creative person despite the hand dealt to you.

Even though I said this wasn’t going to be a scientific study, I need to get some facts out of the way. I’ve been professionally diagnosed with a handful of mental disorders. I’m going to cover each one individually, describe how they affect my life, and how I continually work to do my best writing despite the negative (and sometimes positive) impacts on my mental and emotional health.I wanted to write this for everyone else out there that may be in the same (or similar) boat as I am. If I’m able to hold down four jobs (Day Job, Contract Job, Writing Job, and Non-Profit Job) and be successful at all of them, I feel you can do it as well. I hope you find my words encouraging and informative, but they are no replacement for qualified, professional help. If you feel you have a mental issue that you can’t deal with on your own, I urge you to contact your doctor and talk it over with them. I did. I’m glad I did.

Bipolar

The most impactful mental disorder of mine is that I’m type II bipolar. I also cycle “fast” as compared to others with bipolar disorder. If you’re not sure what bipolar is, I’ll explain in brief. Everyone goes through mental and emotional “ups” and “downs.” It’s just natural. People with bipolar disorder will have higher “ups” and lower “downs” than the normal curve. Some of them, like me, will move between days of great elation and days of crippling depression in a very fast manner.

My typical full cycle (number of days between two peaks) is roughly a week. This means that on Monday and Tuesday, I’ll be a great mood. Wednesday and Thursday will be fairly normal followed by a depressed Friday and Saturday. A return to normal on Sunday will follow and I’ll cycle back into manic behavior sometime on Monday. It’s not a precise science, and I’ll even spend a week “on high” or a week “down low.” It’s not entirely predictable, so I can’t schedule my life around it. I just have to deal with what comes, when it comes.

This affects my life, and my writing, by interrupting those high energy times where I produce more than the average person. The interruptions come in the form of days where I barely want to get out of bed, let alone put on pants, go to the Day Job, struggle to put 100 words down on paper, or even eat more than a light snack. When deadlines in the Day Job or the Writing Job come about, my boss/editor doesn’t care much that I don’t want to get out of bed. What they care about is that I get them the software or story edits they’re waiting for.

Part of my continual struggle with the rapidly changing moods is a daily medication that keeps my wildly swinging curves of up/down at a more reasonable level. Even with the medication, my highs are a tad above regular areas, and my lows are still a good amount lower than the lows. Unfortunately, the medication doesn’t do much for the speed at which I cycle through moods, but I have to deal with that on my own.

The way I deal with this is that when I feel a high hit me, I do as much (or more sometimes) as humanly possible to be productive. This includes late nights, early mornings, skipped meals (more on that later), and throwing myself whole hog into the project at hand. This helps me get ahead on projects and stories, so that when depression hits me hard, I have a little more leeway in how much behind I can get during those days.

Hyperfocus

Another mental disorder of mine is hyperfocus. Basically, it’s the opposite of ADHD (Attention Deficit Hyperactivity Disorder). My ability to hyperfocus allows me to sit down, crank on a project (whether software for the Day Job or prose for the Writing Job), and delve so deep into that project that I won’t come up for air for hours, sometimes days, later. The longest stint that I’ve hyperfocused on a project was 52 hours straight. No sleep. Little food. Some water. Few bathroom breaks.

This might sound like a blessing to some of my fellow writers out there (especially around deadline time). However, my ability to hyperfocus is rarely within my control. I can’t trigger it or turn it on. It just happens. I also can’t turn it off without an outside force exerting itself upon me, and that outside force (usually in the form of my wife these days) must be persistent and annoying to snap me out of my hyperfocus.

The downside is that this is a dangerous thing for my physical body. I’m sure you’ve heard of the people keeling over dead after a two, three, or four day binge gamefest on some online game. I’ve come close to that a few times. One of the downsides of my bipolar medicine is that it causes low blood sugar. If I don’t eat on a fairly regular schedule, my blood sugar crashes, and I have a hard time thinking, walking, speaking, or just being a coherent human being. This means driving to the nearest fast food joint on my Day Job lunch break is out of the question. Good thing we have vending machines on site.

I’ve yet to find a good way to deal with this, even though I’ve been this way my whole life. One of my mom’s favorite things to say to me was, “You have a one-track mind.” If we’d only known the truth of that statement when I was a child… I’ve tried the software and alarms and alerts and such that trigger every so often to remind you to get up from the seat and walk around. I’ve tried alarms to tell me when to go eat. None of it works for me because I can click the “dismiss” button and get back to the thing I’m focused on. Like I said, the interruption to my hyperfocus must be persistent and unyielding for it to snap me back into reality.

Tourette syndrome

If having bipolar and hyperfocus weren’t enough, I also have to fight with Tourette syndrome. Like with bipolar, there are nuanced flavors of the disorder. My particular flavor of Tourette syndrome manifests three different ways, and I’ve managed to get one of them under control, one of them as a rare thing, and the third runs wild in my system.

The one that I now have (mostly) under control is the fact that I grunt like an animal when stressed out. I’m not talking the “job interview” level of stress. My Tourette syndrome triggers when going through the loss of a close loved one, making a massive, live-changing decision, or something similar. I was almost expelled from sixth grade for “intentional disruption” of the class with my grunting. The ridicule was massive, and I knew that it was time to bring into control the part of me that grunted. It took several months of intense focus and meditation, but I was able to eventually bring the vocal outbursts under control.

The second symptom I have is that I used to constantly blow on my hands like you would after touching something hot. This manifested after I brought my grunting under control, and it still persists to this day. However, I’m able to keep it under wraps to the point that I only do it a few times a day instead of constantly like I did as a pre-teen and teenager.

Lastly, I have tics that ripple through my body like a wave. These usually happen in my jaw, elbows and knees. Not really places that people study or watch (other than the jaw), so I can let those tics run free without needing to bring them under control. When someone does notice, they think I’m nervous or restless.

None of these impact my writing directly, but they do affect how I have to handle myself in social situations. While I’m not in the point in my writing career where readings, signings, and public presentations are regular activities, I do have to appear in public as president of Pikes Peak Writers, and I give the occasional presentation to Pikes Peak Writers attendees.

While doing these public appearances, I tend to “twitch out” beforehand to get it all out of my system for a good thirty to forty minutes before the tics start to creep back in. I got the idea from a story about a brain surgeon with tremors in his hands from Tourette syndrome. Yeah. You read that right. Brain surgeon. Hand tremors. Well, he would meditate and induce a near seizure in his arms and hands. This would calm his system down to the point where he could operate normally for several hours.

Closure

As you can tell, there are a variety of things getting in my way of creative and professional work, but I still manage to get things done. I’ve had many people comment on the quality and quantity of my work over the years, so I know I’m doing something right despite everything that is “off” about how my brain works. I’ve had many ask me my secrets, and I’ve always had a hard time putting my “secrets” into words until now.

The last paragraph isn’t there for me to brag.

It’s there to show you that no matter what you have going on in your life, your brain, your body, or your society, you can create as well. I don’t care if you’re writing prose, crafting software, painting oils on canvas, developing poetry, taking photos, hammering out a sculpture, or any other creative venture.

New friends take their radio show on the road in search of plague survivors.

A man seeks love in a fading world.

How would you survive the apocalypse?

Defying Doomsday is an anthology of apocalypse fiction featuring disabled and chronically ill protagonists, proving it’s not always the “fittest” who survive – it’s the most tenacious, stubborn, enduring and innovative characters who have the best chance of adapting when everything is lost.

Robison Wells is the author of Blackout, Deadzone, Variant, Feedback, Dark Energy, and Airships of Camelot. Variant was a Publisher’s Weekly Best Book, a YALSA Quick Pick for Reluctant Readers and a Bestseller. Robison lives near the Rocky Mountains in a house not too far from elk pastures. His wife, Erin, is a better person than he will ever be, and their three kids bring them mischief and/or joy.

Robison has an MBA in marketing, and a BS in political science, with an emphasis in International Relations of the Middle East.

Robison suffers from five mental illnesses (panic disorder, OCD, agoraphobia, depression and dermatillomania) and is an outspoken advocate for those with mental illnesses.

His books have been published in nine different languages, and he is the winner of many awards both in and out of the United States. You can read more about him on his website.